Showing posts with label Lungs. Show all posts
Showing posts with label Lungs. Show all posts

Sunday, October 29, 2017

Cardiac Catheterization Update

Dear Diary,

Well, we had an interesting day yesterday.
Spent nearly the entire day in the St Joseph's Hospital cath lab.
We went in at 1 p.m.for what should have been a 20 or 30-minute procedure at 3pm and wound up getting out around 7pm.
Apparently, they had several heart attacks come in on an emergency basis so I was sort of left to last.
When I finally got in, I had the best suite they had available. The whole procedure took about 15 minutes and it was no more traumatic than getting a dental cleaning.

The real good news, however, is that the pulmonary artery pressures are down, significantly from the last procedure in January.
The pressures in January were in the low 70s and they are now in the low 40s which is very good. We still need to get them lower but this shows that the sildenafil is definitely working.

They did some special testing to find out whether the pulmonary vessels were reactive or nonreactive. Apparently, they were at least mildly reactive which gives me the possibility of being able to use different medicines if necessary.
At any rate, the wife and I are both very pleased with the results, so pleased in fact, that we stayed at the hospital and had dinner at the cafeteria.
We almost never go out to eat you see! :-)

The other good news is that the wife's hands are healing perfectly and the numbness in her fingertips is going away much faster than we expected. She is ecstatic!

All this excitement is being posted a few days after the fact due to server issues with blogger. Anyway, the wife and I are now back to sitting out on the front porch in 100% wonderful weather so I really don't give a rat's ass!


Cheers!


"Every day above ground is a good day".  -- Scarface

Sunday, October 22, 2017

I'm Still Here!



Dear Diary,

Well! It looks like I haven't posted anything for two months! Consider yourselves blessed.

The wife just had carpal tunnel surgery which appears to have been very successful. She is off work for up to six weeks and I'm encouraging her to take all of it. She deserves it.
When she returns, she should be able to do her job much more comfortably.

No idea what the damn cancer is doing. I'm not due for a PSA for 2 or 3 months. I've been on ADT for about three months now with no major side effects. Makes me wonder sometimes if it's working at all! The interesting thing is that the bladder bleeding stopped about a week after I began ADT and has never recurred. Weird!

I go for another right heart cath this Thursday to see how the PAH is responding to the sildenafil.
The PA pressure last time was a whopping 70. With any luck, maybe it has gone down a bit.

My weight is holding in the low 260s. I'm currently on another diet push to see if I can get to 250 this time. I went off plan for a few weeks out of boredom and gained a little weight back so now I'm back on the wagon. At least my diabetes and blood pressure are doing great and under tight control. :)

A bit of sad news.
Our beloved kitty, Pumpkin passed away peacefully of old age early Wednesday morning, Oct. 18th. He was here with us at the foot of our bed when he passed. As much as we miss him we know he is better off.
We had anticipated this as he was 20 years old. He was our fuzzy baby for 17 of those years.
R.I.P. Pumper!

Pumpkin 1997-2017
I'll update more as I think of it. Right now, I have a bout of fatigue setting in.



Cheers!


"Every day above ground is a good day".  -- Scarface

Thursday, August 17, 2017

Odds & Ends

Dear Diary,

Well now, let's see. What's been going on here in Paradise lately?
Not too much which is why I haven't posted anything in a while.

The wife and I just got a nice, free, pre-owned Serta queen size mattress to replace the futon mattress that we've been sleeping on since we came to Arizona in '94. (no, it didn't come with pee stains)
We've both been sleeping better since. "Beggars can't be choosers".

Our 2002 Chevy S-10 just started leaking oil from the rear differential a couple of weeks ago.
Took it to a brand new garage that we just discovered. Turns out the pinion seal was bad. They had it fixed by the next day because they had a problem finding the part.
So, we got that fixed and finally got the oil changed (it's been a while) for a very reasonable price.
We will be using them from now on for anything I can't do.

Health wise, no noticeable side effects from the ADT (Androgen Deprivation Therapy) that I am on to slow or stop the progression of the cancer. I keep waiting for the other shoe to drop but so far, I'm feeling fine with the exception of a little transient fatigue now and then.
I guess the more severe stuff comes on after months of treatment. I can wait! ;)

I think I mentioned in a previous post that I succeeded in losing 49 pounds over the past six or seven months. I've started cheating quite a bit lately, probably due to boredom with the menu, which bothers me. I've gotta get it under control soon before I start gaining again.
It's not an issue with quantity this time but more with what I eat.
Ketogenic dieting works but it is difficult. You really have to stick to the plan.

The bladder problem has at least temporarily resolved. There has been no pain or bleeding for several weeks. I'm still 100% incontinent but that will probably never change. It's just really nice to be able to take a vacation from blood clots and catheters for a while.

I can't really tell if the new stuff (sildenafil) is having an effect on my lungs or not. If there are changes, they are very subtle. I really need to remember to ask Dr. O what he expects as far as effects on the O2 saturation and what time frame we're looking at.
Regardless, I continue to very gradually improve which is unusual for arterial pulmonary hypertension. It's usually just the opposite.

*sips on a bourbon*

On another note, the wife has now signed on with my cardiologist (on my advice) for a baseline evaluation. She just had a Doppler ultrasound of her carotid arteries which was recommended by our optometrist. She has a 60% occlusion of the right carotid. Probably not a serious issue but why take the chance? We want to see how much this increases her risk for stroke.
She also has fairly severe carpal tunnel syndrome. We saw an orthopedic specialist today for an evaluation and she got a set of wrist braces. She will have a nerve conduction test in the near future and, depending on the results of that, be evaluated for possible surgery.

And with that, I'll sign off with one last comment. It is very obvious that we, (the world) are in the so-called 'end times' and we are very grateful to be on the way out and not on the way in!
Does that smack of religion? Not to this old boy! It smacks of reality.
We don't need religion or blind faith to see the obvious!



Cheers!


"Every day above ground is a good day".  -- Scarface

Thursday, July 13, 2017

Some Good News For A Change!

Dear Diary,

So, it's been an eventful past couple of days!

On Wednesday, we saw Dr. M, my cardiologist for a routine follow-up. He is pleased with my progress with my weight and the respiratory issue. We are going to schedule another Doppler echocardiogram for this coming week to check on the size of the myxoma. My last one was about a year ago. The new information will help organize our priorities regarding the heart surgery.

Today, (Thursday) I went to St Joe's for a six-minute walk test and pulmonary function testing.
Apparently, I did very well and there is an improvement from the previous testing 4 months ago.
It was also officially confirmed that I have lost 30 pounds! They were impressed.

After the testing, we met with Dr. O, the pulmonologist to go over the game plan.
He is finally going to start treating the pulmonary hypertension with drugs. We have been waiting a long time for that.

We are going to start with low dose sildenafil aka Viagra as a first line treatment and see if we get a good response. If we do, they will do another right heart cath to check the pressures.
The goal here is to actually reverse this process that is causing the PH. I hope he's right because PH is usually a chronic progressive condition and not reversible.
Cardiac and pulmonary auscultation was unremarkable save for a few fine crackles in the left base.

*sips on a neat bourbon*

As far as the cancer goes, I'm about 2 1/2 weeks into bicalutamide (Casodex®) to see if we can reign in the horses that have escaped the barn. I expect to be starting leuprolide (Lupron®) in about a week.
This is not a cure but it could theoretically delay the onset of metastases and hopefully buy me a few more years.

Any chance of a cure is no longer on the table but long term control is very possible. I am always grateful that I am a Gleason 7 and not a 8, 9 or 10. My heart goes out to those who are.
At this stage, pain control is not an issue but I am very concerned with this current nonsense about opioid regulation. If I live long enough, eventually I will require them. If they become over-regulated, I may face the death my father had and I don't even want to go there!
For folks in my position, opioid drugs are our friends.

*sips a little more bourbon*

We are now into monsoon season here in Paradise with triple digits and high humidity. Hoping we'll get a little rain this year. Every year we seem to get less and less.
Outside conditions are less than optimal for any kind of exercise so, once again, I'm kind of confined to the house.

Well, enough for tonight. Keep the faith!


Cheers!


"Every day above ground is a good day".  -- Scarface

Sunday, May 14, 2017

Short Update

Dear Diary,

Tonight will be a very short update. (the crowd goes bananas!)

I have a virtual shitload of labwork coming up on the 15th. It's possible that I have a bladder infection probably due in part to somewhat careless intermittent cathing. They're going to do a urine culture to see if there are bacteria in there. My urine has been more or less cloudy for weeks.

Other tests are a CBC and a PSA (standard edition). I'm hoping it has stayed relatively stable over the last three months.

I'm told that the other testing ordered by my pulmonologist is to make sure the new diuretic, spironolactone isn't trashing my kidneys.

More after I get the results back.


Cheers!



"Every day above ground is a good day".  -- Scarface

Sunday, April 30, 2017

Sunday News

Dear Diary,

Today, I start the new drug, spironolactone, for the pulmonary arterial hypertension (PAH). It will probably take a few days to a couple of weeks before it becomes clinically active.
The docs, especially Dr. O, seem to feel that I'm nor fully "dried out" yet so this is another diuretic to be taken daily in conjunction with Lasix™. We'll see what happens.

I have an appointment set up for a routine PSA blood draw on 5/15 and one on 5/16 to see my new optometrist. It's been forever since I last had my eyes checked and I can't see worth a shit so I guess it's about time.

Tomorrow, I'm going to call my health insurance company and see if they can tell me if my annual deductible has been met. I find it hard to believe that it has but certain providers have not been charging the usual $50 co-pay that applies to specialists. One even said that it had been met.
If it has been paid, this would be a financial windfall for us this early in the year. I have a lot of large medical expenses coming up and that would greatly offset the financial hit.

General overall health is not remarkable so far. No disasters. (knock on wood!)

I'm sort of dreading this coming month. Our '72 S-10 is due for emissions testing and this year, it has a leak somewhere in the system. If they pick that up on inspection, the truck won't pass and the repair costs will most likely tap our coffers big time! We are trying very hard to save a little bit here and there for just such emergencies but it's very difficult on an income of SS + 1 part time job.

Oh well, I guess that's what growing old in America is all about nowadays!


Cheers!



"Every day above ground is a good day".  -- Scarface

Thursday, April 27, 2017

Pulmonary News

Dear Diary,

It appears that the 'gods of cardiopulmonary medicine' actually discussed my case in some detail this morning. What a change!
I got a phone call early this morning from Dr. O's nurse practitioner requesting a callback to discuss my diuretic regimen.
They want to start me on another diuretic, spironolactone, in addition to my daily furosemide (Lasix®).

They are going to try to dry my lungs out even further in hopes of relieving some of the arterial pressures. If they can do that, it will automatically make me a much better candidate for future heart surgery. Within the next few months, I will have another spirometry and another 6-minute walk.
Depending on those results, I may even have another right heart cath. to check pulmonary pressures.
Those run $25,000 per test out of which we pay $1,240. We average at least $800/mo direct outlay to 10 medical providers alone to say nothing of misc. expenses such as prescription costs, insurance premiums, home medical care and supplies etc.

We are no longer able to maintain a buffer for emergencies such as vehicle breakdown and maintenance, home repairs and maintenance and property upkeep. The list goes on and on.
Due to the last bankruptcy, we have no credit whatsoever so that is not an option. If my wife wasn't working at the grocery store part time, we would definitely crash and burn.

I have no idea what we'll do if we have to start actively treating the cancer. My only hope is to be able to hang in until next year when I hopefully will qualify for Medicare.

Wish me luck! ;)


Cheers!


"Every day above ground is a good day".  -- Scarface

Friday, April 14, 2017

Cardiologist Visit

Dear Diary,

Today's cardio visit was extremely unremarkable. We are still in 'hurry up and wait' mode.
Nobody is communicating with anyone else. Doc wants to know why the pulmonologist hasn't suggested treating the PH medically.
The heart surgeon is supposed to call me this Monday regarding his assessment of my TEE. He apparently tried to call me last week but I missed the call.

There is an outside chance that with all the medical bills I've racked up lately, I may have met at least part of my annual health insurance deductible. We're not sure but when I saw Dr. M this morning, the $50 copay was waived. I'll take that!

*sips bourbon*

I'm thinking of starting 'Dave's Online Death Pool' so my friends and enemas can place wagers on which is gonna kill me first, the cancer or the myxoma.

Fuck it! Enough for tonight.


Cheers!


"Every day above ground is a good day".  -- Scarface

Wednesday, April 12, 2017

Recent News

Dear Diary,

A few short updates.

First off, over the past couple of months, I've intentionally lost 18 pounds. (yes, Atkins works)
Losing even this little bit has significantly improved my ability to breathe. In other words, I'm now getting more 'bang for the buck' from every liter of o2.

I now have a portable o2 system consisting of 'M' tanks and a backpack for them. This arrangement now allows me to drive again. YAY!
The system uses an o2 conserver which delivers o2 in pulses, on demand rather than continuous flow.
Depending on my level of activity, it looks like I'll get about 1.5 hours @ 3 lpm on average. More than enough to do errands on.

I am also no longer taking valsartan for BP control as it was lowering my diastolic BP into the 40s and making it difficult to even move around. Also, so far, most of the back pain is gone. This is one of the side effects of valsartan.

Right now, I am probably the healthiest I've been in over a year! Let's hope the trend continues.

Seeing my cardiologist this Friday to get his take on all of this.



Cheers!


"Every day above ground is a good day".  -- Scarface

Thursday, March 30, 2017

O2 Concentrator vs Tanks

Dear Diary,

I got some interesting news from my oxygen supplier today. Turns out they don't even carry backpack size electrical concentrators any longer. Apparently, they were a nightmare as far as maintenance and upkeep.
My next option is smaller tanks which I could carry in a case over my shoulder.
There are a number of sizes available and this option would allow me to drive without worrying about battery life.
Turns out I can just add this equipment to my regular order without any prescription change or an increase of monthly cost.
Very small concentrators are available from a few other companies but that would require more hassles with the insurance which, quite frankly, neither the wife nor I are up to right now.

Tired with a lot of muscle aches and poor O2 efficiency today. Don't know what the hell is going on. diastolic BP still in the high 40s despite being off valsartan for two days.
Will communicate this to the cardio guy in the morning.

I AM TIRED OF BEING SICK!


Cheers!


"Every day above ground is a good day".  -- Scarface

Monday, March 27, 2017

Visit With Cardiothoracic Surgeon

Dear Diary,

We met with Dr. B, the new chest cracker this morning. Really nice guy and very informative.
We were lacking some data that he expected we would have but here's the general gist of the encounter.

He wants me to have another TEE (TransEsophageal Echocardiogram) to assess the current size and status of the myxoma. He feels that, unless the tumor is mobile enough to partially occlude the mitral valve, it couldn't be causing my respiratory symptoms.
He explained (quite graphically) that he is against going in and removing the tumor unless he knows that is what is causing the problem.
He feels that if he removes the tumor and doing so fails to resolve the problem, there is a very good chance I would be on a respirator, fed through a stomach tube for weeks or even months. There is also the very real possibility that I could have a stroke or even die, possibly on the OR table.
So, as long as I have this lung issue, I am an extremely high risk surgical candidate.
Until I have another TEE, not much is gonna happen...as usual.

Also, it appears that I may be over-medicated for my hypertension. My BP at the doctor's office was around 160/70, that was before I had taken any meds for the day. When we got home I took all my meds as usual and 3 or 4 hours later the BP is around 95/40 and I can barely drag myself around the house!
One of the new meds I'm on, valsartan, may be the culprit. I'm going to speak to my cardio guy tomorrow morning to see about modifying the dosage.

So, to say the least, both the wife and I are are a little depressed.

Ending on a good note, it looks like I may be approved for a portable O2 concentrator. That would allow me to drive again which would be nice, especially since I haven't been behind the wheel in over a year.


Cheers!


"Every day above ground is a good day".  -- Scarface

Wednesday, March 22, 2017

The Latest News

Dear Diary,

So, here are the latest updates.

This past Monday, I saw my GP for a diabetes follow-up. Much to my (and his) surprise, my usually off the scale lipid panels were perfect, the best I've ever had. I'm hoping it's due, at least in part to my low carb diet. Time will tell.
He also had ordered a CBC which seems to have been lost in transit. I have more unrelated labwork to be done this Monday so I will speak to them about that then.
Also, we seem to have my chronic hypertension under control after all these years! (knock on wood)

Tuesday was a disaster. We had an appointment with the pulmonologist at St.Joe's at 3:00 pm and didn't get out of there till around 5:30 pm. We wound up getting caught in Phoenix rush hour and didn't get home till after six, plus, I was having bowel issues which made the trip somewhat miserable.
On the bright side, Dr. O commented that my most recent PFT has improved and chest films were normal. He actually said that my lungs weren't really in that bad shape. He is still convinced that most of the problem is due to the myxoma.

*sips water*

So now, as a result of that appointment, we finally have an appointment this Monday with Dr. B, the cardiothoracic surgeon. The plan is after I see him for an evaluation, Dr. B, Dr. O, my wife and myself will sit down together for a face to face meeting. If that goes well, I will be scheduled for surgery shortly thereafter. A lot more info. after Monday.
I really hope this plan comes together real soon because, as I've stated before, I am literally sitting on a ticking time bomb.

That's it for now.


Cheers!


"Every day above ground is a good day".  -- Scarface

Sunday, March 05, 2017

Back To Bourbon And Bitching

Dear Diary,

Well, howdy there! Feeling a little chatty here after imbibing on bourbon and a couple of 'benzos',
Don't recommend it for the kiddies unless you really want to shut 'em up bur it works for me. Lol!

Managed to blast my diet into oblivion at the local Dunkin' Donuts® with the wife and some close friends. Yep! I still have a couple of friends. They're just waiting till I die hoping there's something in my will for them! There are going to be sadly disappointed.

The wife is at work and I miss her badly! I get very lonely without her. I spend a lot of time wondering what I'm gonna do if she croaks before me.

*takes long sip of booze*

I'll tell ya one thing though, the very next person who has the balls to suggest that I find Jesus, they're gonna meet him right then and there! This is "people hating day" for me. Outside my extended family, there are only 4 or 5 people that I actually consider 'friends'.
I'm really happier on my laptop than I am with most people, besides, my laptop doesn't drink and has absolutely no problem with consensual sex.

*more booze, no sex...yet*

I've never seriously considered suicide. Suicide is for losers and cowards, neither of which seems to fit my persona. I actually regard my declining health and eventual death as more of an adventure than a threat.

All my life, I've never 'fitted in' the way most people seem to do. In my youth, I was always skipping school in favor of escaping into the woods on the nearby hills of the New York Southern Tier where I spent most of my ten years. I also spent a good deal of time on the nearby river as I had a wooden rowboat which I had purchased from a friend.

I was tormented and frequently beaten in school for being different. I didn't want to fight or engage with my peers. Most of my friends were adults. By the time I was 16 and moved to Rochester, NY, my spirit was pretty much broken. It is only over the past couple of decades that that has started to improve.

Over the course of my 64 years on this God forsaken planet, I have gone through four wives and managed to survive on menial employment.

I AM TIRED OF THE BULLSHIT!

*more booze*

How do you think you would feel if you walked around all fucking day in wet diapers because of lack of bowel and bladder control?
How would you feel if you peeing and pooping blood all the time?
How would you feel if the only way to control your weight was  to give up most of what you enjoy eating?
What if you had active cancer gradually eating away at your body and you have no clue where it is or what can be done about it?
What if you depended on up to three liters of oxygen, 24/7 to get you through the day, wheeling a tank around with you wherever you go due to pulmonary hypertension?
What if you had a benign tumor in your heart which could embolize or metastasize at any time potentially causing stroke, death or both.
What if your medical team didn't want to do open heart surgery until my lung function was improved?
What if you had Type ll diabetes?
What if you had no sexual function whatsoever and never would again?
What if you had to take 14+ drugs every day at the correct times?
How would you feel if it was fairly certain that you would probably not live more than another five years, if you were lucky and you had fucking funeral homes sending you propaganda,

I'm out of here for tonight,

R.I.P. Chris Hitchens, You died well and not in vain!

*more booze, fuck it, I say*


Cheers!


"Every day above ground is a good day".  -- Scarface

Wednesday, March 01, 2017

Today's Activities

Dear Diary,

Today was a fun day. We had to get up at 5:00am to get to St. Joe's for a 6:30am check-in for my PFT (Pulmonary Function Test) and my six minute walk. Just had time for a cup of black coffee.

According to the respiratory tech, I did pretty well although I won't really know too much until I see Dr. O on the 21st.

The real fun was yet to come. We stopped by the hospital cafeteria for coffee and a light, 'carb smart' breakfast and then took off for home. Upon arriving, I discovered that the nagging bladder bleed that's been bothering since yesterday had decided to go nearly straight blood and a significant amount of it. No clots this time, just a nearly constant drip. I elected to skip the Xarelto® at least for today because I think it is really aggravating the issue. The bleeding is worse than is was when I was on warfarin.

7:00pm: I decided to self-cath and do a saline flush. No clots but a lot of dilute blood. We're just going to have to sit tight and wait. I really don't want to go back in to the ED for another round of  CBI!

8:00pm So far, it appears the bladder wash out was successful. The urine is running clear. :)

On another note, a few days ago, I re-started my ketogenic diet (Atkins®). It seems to be the only way I can reliably lose significant weight. So far, I've lost about nine pounds of water weight and my glucose is stabilizing. I used the diet previously but didn't stick to it. To really work, it needs to become a lifestyle.

Going to go eat dinner now.


Cheers!


"Every day above ground is a good day".  -- Scarface

Saturday, February 18, 2017

A Nice Rainy Saturday

Dear Diary,

Quite rainy here in paradise this weekend. It's a nice change from the usual.

The wife is at work and I'm putzing around the house doing as much as I feel I can get away with.
My back and neck are giving me problems, as usual, and the rain isn't helping much either plus my weight in up to 298 as of this morning.
The furosemide I'm taking for water weight doesn't seem to be as effective as it used to be. Not sure why.

I've got an appointment with Dr. F, my urologist this Tuesday to possibly have a quick cystoscopy done to see what the current bladder status is and also to bring him up to speed on the prostate cancer/PSA issue. We hopefully will be putting together a plan of action for when it is needed.

I also have pulmonary testing including a 6-minute walk test and spirometry scheduled for early March. This is in preparation for seeing Dr. O, the pulmonologist on the 21st.
The 6-minute walk test is not a 'pass or fail' type thing. It is merely a practical measure of what I can currently do. I will be allowed to do it on oxygen, fortunately!
This is all being done to hopefully qualify me for heart surgery in the very near future.

The wife is just getting over a head cold which is something neither one of us needs. Hopefully, I won't get it! The seasonal flu is also going around, big time. Both of us have made sure we are properly vaccinated but the thought of getting even a light case is scary. At our age, the flu can be fatal and this year's vaccine is supposedly only 50% effective.

I think I mentioned in a previous post that I was now on Xarelto® as a blood thinner. My cardiologist managed to get it approved by my insurance but it turns out that my co-pay will be over $200 for a thirty day supply! We cannot possibly afford that so I may wind up back on good old warfarin.
I am currently researching discount plans and manufacturers programs to see if there is anything I can use. Unfortunately, most of the really good programs require that I be uninsured, which, of course, is not an option.
The good news is that Xarelto® appears to be the only one of all the drugs I have to take that it going to be unrealistically expensive...so far.

At my last cardiology appointment, both the wife and I were amazed at the results of the angiogram and other tests that I have undergone. Dr. M says that, other than the myxoma in the left atrium, I have the heart of an 18-year-old! Given my previous lifestyle, that's remarkable. I feel sorry for the 18-year old with my 64-year-old heart! ;)

Money's a little tight right and we were forced to replace the battery in the S-10 just last week. My little granddaughter, Arabella over in Italy had to go without a birthday gift from Papa and Karen again this year. We both really miss them. I'm beginning to think that I may not be around to walk her down the aisle when she decides to get married. She is such a beautiful little girl!
I don't blame the kids at all for thinking we're ignoring them but our lives are in limbo for the foreseeable future and there's not a lot we can do about it.
If I can ever regain even a major fraction of my health, it might be possible to fly over there for maybe a month. We would love to be able to do that. My granddaughter only knows me and her grandmother from Skype,

My kids!



Well, the old lady should be getting home any time now and I hope she is careful in the rain as our windshield wipers are somewhat compromised. Gotta get new ones soon!

I think it's gonna be a really good night for sleeping and dreaming of a better life for both of us.

Good night all!


Cheers!


"Every day above ground is a good day".  -- Scarface

Friday, January 06, 2017

Big News (we hope)

Dear Diary,

So, today is Friday the 5th. Yesterday, we went for my appointment with my new
pulmonologist at St Joe's.

After meeting with his nurse practitioner for about half an hour to coordinate my medical history we got to meet Dr. O. Dr.O is the Associate Medical Director of the Lung Transplant Program at Norton Thoracic Institute, St. Joseph’s Hospital and Medical Center.
After reviewing all my history and tests over the past year, he feels extremely confident that my symptoms are not due to a lung disease at all. It is my heart.

Apparently, the left atrial myxoma is causing a back pressure phenomenon which is causing pulmonary edema and pulmonary hypertension resulting in exertional hypoxia. He believes as soon as we get the myxoma removed my symptoms should resolve.

He is going to present my case to one of their top thoracic surgeons and to my cardiologist, Dr.M, to develop a plan for surgery. He feels there has been too little communication between the active players over the past year.

I will see him again in a month to go over the plan and any risks involved.
We are also going to meet the surgeon who will do the procedure. It is possible that this can be done endoscopically without having to split the sternum. Less likely, but still possible is their ability to accomplish this without stopping my heart.
Complications are expected however the main concern is if, and how long I will remain intubated post-surgery.

Around that time, I will have another LFT (lung function test), this one at St. Joe's, which will help them decide whether I am a viable candidate for surgery.

Before yesterday, both my cardiologist and I were starting to think that I would have to live out the rest of my life with the myxoma.
Let's hope these people know what they're doing!

Additional good news. With my new health insurance, I can now re-establish my relationship with my last urologist, Dr. F. This could not happen at a more opportune time.
He can now re-address the bladder issue as needed but also take over most of my cancer care.

Life is good! :)    
                       
Cheers!


"Every day above ground is a good day".  -- Scarface

Tuesday, January 03, 2017

Relevant Ramblings

Dear Diary,

It's been a rough week here in Paradise for yours truly. The weather has been cold and rainy for the most part and my aches and pains are killing me! :( It's mostly my lumbar area and my middle and upper back.
I feel like all my muscles are stiff and heavy (no surprise there!) It's the worst just before I get up in the morning so it's costing me some sleep time.
I'm trying to avoid taking any OTC meds for it because I'm on so many other drugs.
I guess I'll just turn up the heat a bit and wait till the weather changes.

*sips wine and feels sorry for himself*

The bladder bleed is making the rounds again for some obscure reason. That's another thing that's making me depressed. I just feel like a walking disaster area!
I just go day to day, room to room followed by a 50 foot O2 line. I can no longer do any of the things I enjoyed before I became ill and that hurts... a lot.
I'm starting to lose faith that the "miracles of modern medicine" are going to get me through this.
Even if my lungs do get better, I still have that goddamned ticking timebomb that is the myxoma sitting there in my heart. How the hell did I ever get that?

*more wine*

I can't believe Karen is hanging in with me through all this. She came from an entirely different lifestyle and yet she has been my rock for 25 years now. Imagine living 24/7 with a totally disabled,dysfunctional individual.
Sometimes, I think I have driven her crazy. My wife is a saint and I will love her forever.

*pours second glass of wine, (yes, it's cheap)*

Lately, I'm finding myself more and more preoccupied with my own mortality, especially at night when I ought to be asleep. I meditate on what to expect when my final moments arrive.
I want to die well, as the saying goes yet I'm not quite sure how to do that.
It's really not the state of non-existence that concerns me but the way I get there does. Am I doomed to suffocate to death? What is that like? I want a peaceful death, in the hospital where they can control the process somewhat.
I keep thinking that I might rather have the cancer take me rather than the lung disease. For some weird reason, dying by cancer seems preferable to slow suffocation.

I want my mommy! ;)

Do I seem creepy? I hope not but if I do, I can redily understand why. I don't fit into society like other people do. I never have. I've never really wanted to.
Ever since I started school I have been considered weird to people that don't know me well. They seem to see me as someone to avoid. Over the years, I have learned to accept this but it still bothers me when I see in someone's eyes that I scare them. Ok, enough of that!

I really miss my son and daughter-in-law. I am often afraid that I won't ever see them in person again.
I don't think they really believe that I love them both. I fear that I won't see my little grand-daughter again. Time passes so quickly!

Oh well, the wine is taking it's toll and it's time to go.



Cheers!


"Every day above ground is a good day".  -- Scarface

Wednesday, December 28, 2016

General Update



Dear Diary,

Blood pressure has been real high, (180s) systolic for a couple of weeks now. Talked to the cardiologist about it and we decided to stop the Metoprolol in favor of Carvedilol which is a non-selective beta blocker. We also added Valsartan. Valsartin is an angiotensin II receptor antagonist (commonly called an ARB, or angiotensin receptor blocker), that is selective for the type I (AT1) angiotensin receptor.
Hopefully, these new drugs will get this under control before I have a stroke.

*sips wine*

In other news, I have decided to drop the pulmonary guys that I've been working with for the past year.
I am switching to another pulmonologist at Norton Thoracic Institute which is a part of St. Joseph's Medical Center which is where I had my lung biopsy done.
I have an appointment for the middle of next week for another echo and a vent perfusion scan before I see him the next day.
The last time I had a V/Q lung scan was a year ago when this nonsense first began. At the time, the results were unremarkable. It should be interesting to see what we get this time.
When I get the latest echo, I will ask them to check the status of the myxoma at the same time.

*sips more wine*

All these new goodies mean that the wife and I are going to take a huge financial hit on top of what we already owe. We have coasted for the past couple of months due to my deductibles all being met for 2016 and the insurance picking up 100%.
With my new insurance, I have a much higher annual out of pocket ($7,000) than I did last year so it looks like we're in for a bit of a struggle.

At least I didn't spend this Christmas in the hospital like I did last year. Thank goodness for small favors! Lol!





Cheers!

"Every day above ground is a good day". -- Scarface

Friday, December 16, 2016

Interesting News (at least to me)

Dear Diary,

It appears that I actually don't have interstitial lung disease after all. Met with the pulmonologist on Thursday and while we were talking, he mentioned that the lung biopsy had ruled that out. Apparently, he thinks the symptoms may be due to pulmonary hypertension along with the tiny blood clots in some of the arterioles of the lungs coupled with possible right heart failure due to the myxoma.
Anyway, it is not an ILD and that's good news.

The plan is to treat the pulmonary hypertension medically which we want to begin ASAP. Problem is, Norton Thoracic appears not to have any record of the right heart cath that was done during the biopsy! That is absurd! The pulmonologist cannot proceed with therapy until he has the data from that test.
What this means is I will need to undergo another right heart cath if the hospital can't find the required information very soon.
There is no doubt whatsoever that the procedure was done as I was awake and alert when they removed the catheter from my neck in post-op.
If the procedure has to be repeated, I'm actually considering asking them to do it without charge, either to me or my insurance. I have no idea if they would consider that but, to me, it's worth a try.

In other news, I've had a recurrence of the bladder bleed, complete with small clots over the past few days. As of today, Friday the 16th, it seems to have resolved, at least for the time being.
It resulted in my not being able to pass urine for a while but a trip to the ED was averted because I was able to self-cath.
We are not sure if this has anything to do with my being on Xarelto® as an anticoagulant. I guess time will tell.

Not much more to comment on till after we get the heart data.


Cheers!


"Every day above ground is a good day".  -- Scarface

Sunday, December 04, 2016

New Insurance!

Dear Diary,

It looks like we have finally found new health coverage for 2017. We went with a silver plan through HealthNet which seems to be about the same as my current plan except that the total out of pocket is significantly higher, $7000 vs $4900 on my current plan.
All my providers are on it and I may be able to get my last urologist back again.
It's going to be very interesting to see what will happen over the next few months when Trump takes the reigns.

In other news, my weight has now increased to 288 lbs and is significantly affecting my ability to breathe. I am now using 4 liters of O2 as opposed to 3. The perceived need for this increase coincided with my weight increase. Not good, not good at all!  :(

Some good news for a change. It appears that we will be able to get a lot more financial assistance than we originally thought. So far, our medical/surgical debt load has been decreased from nearly $80,000 to around $13,000, a much more realistic target. We are extremely grateful!

The surgical wounds are healing well and the pain level has dropped off a lot. I am off the oxycodone now and not taking anything for pain relief. I guess I've been given a good example of what to expect when I have the heart surgery.

I certainly never expected the so-called 'Golden Years' to be like this.


  Cheers!


"Every day above ground is a good day".  -- Scarface